Lorna: One of the essays you wrote for Thinking Person’s Guide to Autism is Identifying and Avoiding Autism Cults. You said, “The best investment you can make in your autistic child’s future is a commitment to intense scrutiny of treatment options.” Would you elaborate?

Shannon Des Roches Rosa >> Unfortunately, there are people who
view autism as a cash cow, and want to milk every dollar they can out of
worried parents who want definite answers or guarantees or cures. Other
people — generally but not always parents — embrace that same autism
misinformation, and fight for it with all the righteousness and zeal of
true believers or cult members. If you don’t learn to think critically,
and evaluate autism information using rational criteria, then you might
fall for the charlatans’ guarantees or surrender to the believers’
enticing groupthink and exhilarating rage. And those two paths hurt
autistic people — they misdirect resources and energy, they promote
horribly disrespectful attitudes that autistics are damaged or broken
unless “cured” or “recovered,” and they can cause physical harm through
gray-area and unsubstantiated medical treatments like chelation or
Valtrex.

3.08.2012

I don't know if you saw yesterday's horrible, tragic news about the Sunnnyvale mother who killed her 22 year old autistic son and then herself. It's awful. It should never have happened. It is never OK to kill a child, there are no excuses for doing so, not even the caregiver fatigue and desperation that every news story I've read is citing.

However, as the media insists on covering this solely as an issue of autism and caregiver fatigue, I will address that issue as well -- and say that there was a lot more than autism and caregiver isolation going on. They were a family that needed more support than they were getting.

I'm sure the details will come out in the media eventually. What you need to know now -- whether you're part of the autism communities or not -- is that the family did not have enough options when their son transitioned out of school -- Leo's school, as it happens, where every last member of the community is devastated and reeling. Where the son was a cherished student for many years.

The son was welcome to transition to Leo's school's adult program, but, as reported in the news, his mother didn't feel it was the right option for him. However she was also not able to find other options. And that, the media is insisting, was likely a catalyst in an already unstable situation.

We need to find better options for young adults with autism and developmental disabilities as they transition out of school and into .... where? We need structure, options, policy ... and to ensure that all our kids have options when their yellow school buses stop showing up.

Ironically, yesterday was a banner day on the internet for discussing school to adulthood transition options. I recommend reading the following articles (three from yesterday, one from a couple of weeks ago) and then let's talk about what the hell we can DO to support all our kids in the transition to their own version of successful adulthood: